The FSHD Society announced the opening today of its FSHD Connect Classroom, the first online, full-day educational conference in the organization’s history. The online conference takes the place of FSHD Connect, the premier global educational meeting for facioscapulohumeral muscular dystrophy (FSHD), which was cancelled this year due to COVID-19. Nearly 300 individuals and families living… Read More »
FSHD Society opens its first global, online educational conference
27th Annual FSHD International Research Congress Goes Virtual
The FSHD Society announced the opening today of its 27th annual International Research Congress (IRC), which is being conducted entirely online for the first time in the organization’s history. The conference is widely seen as the premier global platform for the discussion and dissemination of state-of-the-art research on facioscapulohumeral muscular dystrophy (FSHD). A record 210 researchers,… Read More »
Landmarks and Social Media Are Turning Orange This World FSHD Day
This Saturday, June 20, 2020, the FSHD Society, the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), will be joined by dozens of advocacy groups and allies around the world in celebrating the fifth annual World FSHD Day, a global 24-hour campaign to raise awareness for the disease. On World FSHD Day, the Society will… Read More »
Listen to our Giving Tuesday Interviews
You can now listen to our GivingTuesday Telethon interviews from our December 3rd event. Streamed over Facebook Live, our Telethon host Tim Hollenback interviewed dozens of leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to raise worldwide awareness of FSHD. Their stories were utterly compelling, and the sense of optimism for a treatment… Read More »
Los Angeles Walk & Roll to Cure FSHD makes the news
Our inaugural Los Angeles Walk & Roll to Cure FSHD made the local TV news in Torrance, CA, this week! The event was organized by the Los Angeles chapter of the FSHD Society. Bravo to Walk leader Selina Lai for her energetic networking and advocacy to raise awareness of FSH muscular dystrophy with the broader… Read More »